My journey with SMA Type 1

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Logan update

Its been another interesting week. I ended up taking Logan to the doctor on Wednesday afternoon. We were concerned he had an ear infection and I wanted to just be double sure. Turns out I was wrong and he did not have an ear infection. Another doctor in our practice saw us and did a viral swab along with sending us for a chest xray. He had a chest x-ray two months ago so the doctor thought it would be good to compare. Logan does not use his lungs to full capacity so the main concern was that some fluid could settle and we wouldn’t be able to hear it until it was bad.

Thankfully the x-ray came back clear and the swab was negative. So we are back to the drawing board on what is causing this. Doctor does not think it is teething. You can see where his teeth will come in, but it isn’t swollen nor is it white like a tooth is getting ready to pop through.

Thursday night Logan slept well. Friday night was rough. The first part of the night was quiet. Right around the time we went to bed, Logan’s oxygen started dipping but then popping back up. After about 30 min of it, he stabilized at 93. At 2am, his pulse ox alarm started going off again. I thought he was deep sleeping but when I checked it, his oxygen was dipping again. I turned the alarm off and watched him intensely for about 5 min. We got an oxygen machine last week, but haven’t needed to use it yet. I was debating whether to use it or not. After about 15 min of wrestling with myself, I decided to turn on the oxygen machine to help him a bit. As soon as I turned the machine on (his cannulas weren’t in yet), his oxygen jumped up and stayed up. I laughed to myself…the first damn time I turn on this machine and he ends up not needing it. I stayed awake until almost 4am between being restless and watching him.

Last night was ok, but then today was rough during nap times. While he was awake, he did pretty good! But everytime he napped, his oxygen dipped. We made the decision right before bed to go ahead and put him on .5 liter oxygen (humidified) so hopefully he could rest good. He stabilized at 98 and feel asleep quickly. Until about 20 min ago when I decided to turn the machine off since he went up to 99. I figured he was past the “rough” period and I could turn it off. Well big mistake because he woke up! It took a bit, but he is hooked up for his feeding and resting now. I know not to do that again…

He has done great with his night feedings the past 3 nights. He has taken in over 350ml during a 10 hour period on 35ml/hr. His secretions have picked up quite a bit. He drools so much! I had to change my shirt 3 times today because he would drools so much on it I couldn’t stand to wear it anymore haha.

I think we slept pretty good last night but I still feel drained. Its getting easier to manage again though. Our aid is coming several times this week to help out. I’ve pretty much lost hope that Logan will be comfortable enough for me to leave the room. But, she keeps him occupied enough I can pick up in whatever room we are in without having to be holding him or touching him the entire time. Its a nice change of pace and I think he enjoys it a little bit too 😉